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A Web-Based Coping Intervention by and for Parents of Very Young Children With Type 1 Diabetes: User-Centered Design
Tim Wysocki1, Jessica Pierce2, Cindy Caldwell1
1Nemours Children's Specialty Care, Center for Health Care Delivery Science, Nemours Children's Health System, Jacksonville, FL, United States.
Insights
Coping with type 1 diabetes in young children is hard for parents. A new web resource, designed with parents, offers support and information to help families manage this challenge.
Area of Science:
- Pediatric Endocrinology
- Digital Health Interventions
- User-Centered Design
Background:
- Managing type 1 diabetes (T1D) in children under 6 presents significant challenges for parents and caregivers.
- Parental coping strategies are crucial for positive metabolic and psychosocial outcomes in very young children with T1D (YC-T1D).
- Limited research and resources exist to support healthcare providers in equipping parents with effective coping mechanisms.
Purpose of the Study:
- To describe the application of user-centered design (UCD) principles in developing a web-based coping intervention for parents of YC-T1D.
- To illustrate the use of crowdsourcing to gather input from parents, healthcare providers, and web professionals.
- To summarize the design of an ongoing randomized controlled trial (RCT) evaluating the intervention's impact on child and parent outcomes.
Main Methods:
- Employed UCD principles to create a web-based coping resource co-designed with parents of YC-T1D.
- Utilized a "Web-based Parent Crowd," a "Health Care Provider Crowd," and a focus group of minority parents for input.
- Incorporated formal usability testing and design webinars to refine the resource.
Main Results:
- A completed website and an ongoing RCT evaluating the web resource's effects on parent and child outcomes are described.
- The study details the development and construction process of a user-responsive, continuously accessible coping resource.
Conclusions:
- UCD principles and crowdsourcing effectively facilitated the development and evaluation of a web-based coping resource for parents of YC-T1D.
- This approach can serve as a template for creating similar resources for other populations facing medical or psychosocial distress.
- An ongoing RCT is the final phase to validate the intervention's effectiveness.
Background:
Management of type 1 diabetes (T1D) among children aged <6 years is exceptionally challenging for parents and caregivers. Metabolic and psychosocial outcomes among very young children with T1D (YC-T1D) are tightly associated with their parents' ability to meet these challenges. There is scant research testing interventions targeting these issues and few resources to equip health care providers with feasible and effective coping strategies for these parents. User-centered design (UCD) of a continuously accessible Web-based resource could be a mechanism for helping parents of YC-T1D cope more effectively with the complex challenges they face by providing them with information, solutions, and emotional support.
Objective:
The objectives of this paper are to (1) describe the application of UCD principles to the development of a Web-based coping intervention designed by and for parents of very young children (<6 years old) with T1D; (2) illustrate the use of crowdsourcing methods in obtaining the perspectives of parents, health care providers, and Web development professionals in designing and creating this resource; and (3) summarize the design of an ongoing randomized controlled trial (RCT) that is evaluating the effects of parental access to this resource on pertinent child and parent outcomes.
Methods:
This paper illustrates the application of UCD principles to create a Web-based coping resource designed by and for parents of YC-T1D. A Web-based Parent Crowd, a Health Care Provider Crowd, and a Focus Group of minority parents provided input throughout the design process. A formal usability testing session and design webinars yielded additional stakeholder input to further refine the end product.
Results:
This paper describes the completed website and the ongoing RCT to evaluate the effects of using this Web-based resource on pertinent parent and child outcomes.
Conclusions:
UCD principles and the targeted application of crowdsourcing methods provided the foundation for the development, construction, and evaluation of a continuously accessible, archived, user-responsive coping resource designed by and for parents of YC-T1D. The process described here could be a template for the development of similar resources for other special populations that are enduring specific medical or psychosocial distress. The ongoing RCT is the final step in the UCD process and is designed to validate its merits.
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